I sat talking with a patient about a year ago. Her 36 year old Down Syndrome son had just tried to sneak a soda and we were discussing the challenges our children faced as well as what we faced as parents.

“Did you cry when you found out?” She asked me. “I did. I bawled for days. I didn’t know what else to do.”

I felt bad telling her the truth because the truth is, I didn’t. I didn’t cry leaving the developmental pediatrician’s office that day. I left feeling relieved.

“Honestly, no.” I hung my head. “I felt relieved. I spent 5 years feeling like I was failing as a mom that I was so happy to hear that this wasn’t my fault.”

It still sounds self indulgent.

But the truth is, by the time she was diagnosed I had cried a lot.

I cried every time I couldn’t get her to eat as a newborn.

I cried when I knew her very rigid schedule was disrupted because I knew I would spend the next 48 hours with a baby that couldn’t cope.

I cried when her temper tantrums seemed to never end.

I cried when the next one started again 20 minutes after the last one stopped.

I cried when we couldn’t get her to eat.

I cried when she would bite me and pull my hair.

I cried when we exhausted one therapy and we still weren’t “normal”.

I cried when I made the appointment for yet more therapy or to meet another specialist.

I cried a lot.

And I still cry when she struggles.

But the truth is, the tears come from struggle, not a label. These days she is a happy kid. She’s starting to make friends and finding herself in hobbies. She excels in school and radiates with her accomplishments. Her diagnosis doesn’t upset me because it doesn’t define her and it allows us to deal with the tears constructively. And that is something to celebrate.

It started with a patient I was working with that has been battling Parkinson’s. After he informed me that he was going to be disabled for the rest of his life, I just responded with “I know, it’s not fair”. He shrugged and said “it’s life”. Seeing where the conversation could go, I said “well, the phrase isn’t ‘life is fair'”. We left it at that and continued on with therapy.

Skip ahead a few hours and I for some reason thought my whole family would enjoy a Friday night at the town carnival. Now, to be clear, by the whole family I mean “the kids”. I’ve been here way too many times to enjoy the scene as an adult, but to be fair, for a kid it’s pretty fun.

It’s fun, but it’s loud, it’s crowded, and there are a lot of lights and things to look at. Hell, I get overstimulated. But for a 7 year old autistic child heading home 30 minutes after bedtime, it was way overstimulating. This was as lose lose situation for us. I knew the carnival would bring tears but I also knew that not going would bring tears. What brought the tears on started was the fact that her brother choose to get a fancy you gun that made lots of noise and lit up while she chose to get cotton candy, which he was unable to eat. Charlie would not shared his fun new gun and I told Molly she couldn’t play with it until she wanted her hands. We were 3 minutes from our house. In that 3 minutes we got to how it wasn’t fair that her brother’s peanut allergy was ruining her life because she couldn’t play with his fun because she ate cotton candy. (If your confused, welcome. Pour some wine and join my team). Then came the doozy…. It’s not fair that her friends get to have fun and we never do anything fun. Remember, on our way home from the carnival, ate cotton candy.

Needless to say, the night went downhill quickly. When things calmed and I held my Chardonnay, paying bills at 9:00 PM, all I could think was “shit, none of this is fair”. It’s not fair that she can’t have a good time, having a good time. It’s not fair that he has to miss out on delicious food and events. It’s not fair that he gets blamed for ruining things because he could die and wants to be included. It’s not fair that we are raising 2 difficult children. It’s not fair that he will go under anesthesia for the third time in 5 years. It’s not fair that no matter what we do, big compromises have to be made to keep peace or someone alive. It’s not fair that I feel like several 10 minute crying fits a day is “getting better”. Life isn’t fair.

Often, when non-allergic parents complain about dietary restrictions in the classroom they blame the parents. Sometimes, the child but, it’s often the parents. It’s my fault your kid can’t take peanut butter and jelly to school. I’ve heard it, I’ve heard people complain about how hard it is to send a lunch to school that doesn’t involve nuts. Believe, I know it’s difficult. It’s not impossible.

Charlie’s class is nut free. But not because I asked or demanded that it be. In fact, I didn’t even mention it. The school had a policy in effect for food allergies that stated that I would send in his food for snack time. When he started in the two year old program, I showed up to orientation with a shopping bag full of snacks, with his name on it, for the school to serve him. I was ready to comply with the set of standards. Only I was met with his teacher informing me instead of that, they would like me to provide a list of food that is safe for him to eat and they would buy class snacks based on that. They would make the class nut free and for the other kids “special days” (when the parent of the child brings in the snack) I would be responsible for coordinating with the parent and either alerting the school if they could eat it or send him something comparable. Easy.

Again, I didn’t ask for it. As it turns out, the school is staffed with teachers. They aren’t doctors, nurses or really anyone that feels comfortable giving a child an injection. They are teachers. They teach. They manage a classroom of 2, 3 and 4 year olds. They don’t want to have to inject my son with epinephrine anymore than I do. They make his class safe because it benefits him, me AND them. It’s a win-win-win.

Now, I ask you, don’t imagine that it is your child that could die or that would need to be injected as they struggle to breath, but imagine it’s you. It’s you that is holding a scared, flushed, vomiting, suffocating child that is covered in hives and YOU have to save their life by jabbing a needle into their thigh, how would you feel about allowing the peanut butter and jelly in your classroom? Something tells me you wouldn’t sign up for that situation. Schools don’t either; or teachers, or scout leaders, or camp directors, or whomever. It’s a scary as shit situation. I know, I’ve done it. I remember it like it was yesterday. I was lucky enough to have a friend react as quickly as I did and hold my burning hot, vomiting child while I jabbed his thigh. I couldn’t imagine doing it by myself in a classroom of 16 other kids. I doubt YOU would want to do it.

So instead of cursing at an innocent child or a parent that wants to protect them, try to sympathize with what the caretaker of that child would have to go through in the extreme accident if the allergen is consumed. Then, maybe we could all be a little more understanding because it affects us, not them.

Stampy just took the kids to a farm to run around and give me some space.

It’s been a long week.

We had some difficulty at school at the beginning of the week. The good thing is, we have a teacher that took notice and wants to help. The bad thing is, it probably won’t matter.

I realize I’m pretty cynical, but we’ve been down this road before and the more things change, the more they stay the same. I have a hyperlexic kid who can’t communicate. I have a child riddled with anxiety. I have a brilliant child that can not figure out what to do unless told specifically “do this”. No matter the challenge or developments, these things remain the same. These are the roots of our problems. These cause no difficulty (yet) in school so help is often hard to come by.

Molly’s teacher told me I seemed unhappy at our conference. I’m not unhappy, I’m just lost. I don’t know how to help. We try and we try but we aren’t always successful and sometimes we are just out of ideas. I’m tired. I feel like Molly is often crying for help in her own ways and we can’t help her, sometimes when I try I feel like I’m crying for help and no one is listening.

I face the challenge that it’s hard to describe Molly. I had an “aha” moment today at therapy but it took three years of observation to get there. It came after Molly’s teacher informed me that she noticed Molly seemed lost in class one day. Molly was just standing at her station, not asking for help and not doing anything. I know that lost look. Then we went to an activity at her school. I told her she could go with her friends to the different stations but she just looked at me and looked scared. So off we went to the first station together. Then I saw it. It smacked me in the face. She couldn’t figure out how to decorate a cookie because no one gave her instructions. In fact, she couldn’t even figure out how to hold the plastic knife to spread the frosting. I realized then that she was the same three year old wondering around her preschool class without doing anything because no one told her what to do. Which made me realize why sometimes we have so much difficulty at home. I’m forcing independence on her and she doesn’t know what to do.

Then I felt sad. I felt awful it has taken me three years to catch on that she never developed out of that trait. I realized we’ve grown but we haven’t changed. I’m still as lost as I was three years ago when this battled started and she’s still the little girl that is lost.

Sunday I competed in an Iron Girl sprint triathlon. I use the word “competed” lightly, for really, I finished it. I finished in the top 50% of all competitors, but I was not close to winning or even in the top 100. As I crossed the finish line, a very nice volunteer hung a medal around my neck and I couldn’t have been more proud or more relieved to get that medal. It meant I was done, it meant that my hard work was acknowledged. I earned that medal. I didn’t win it, but I did earn it.

Then I came home and scrolled through Facebook because I couldn’t move anymore and it seemed like the thing to do, and I saw an article being shared about James Harrison (Pittsburgh Steeler) taking his children’s participation trophy and people were applauding him. Then I thought, “I just got a participation trophy” and in my dehydrated over-stressed state, I got a little mad. I thought about all the trophies I had received over the years. They range from participation to first place trophies for multiple sports. I thought about how proud I was when I received the trophy for winning and how receiving the “participation trophy” was nice to receive. It was something I had to remember the season by and how I in no way confused getting that trophy for the first place trophy. Now, concerned that I was just letting my exhaustion get the better of me, I dug out my old trophies and had an experiment. Here are said trophies… (and counter clutter in my house).

Both are from my 1996 summer swim team (yes, I still have trophies I won in 1996). The big one I received for winning the girls 15-18 100 meter freestyle at the championship meet, the smaller I got for being part of the team. Then I gathered the children. A 6 year old autistic child and a 4 year old and I asked them which one they would rather have. Both said “the big one”. Then I explained why I received each one and asked which was more important and again they said “the big one” so I went one step further and asked if they got the small one, which would be given to everyone, would they think they won something and they both said “no”. And Molly even said “I got a trophy for playing soccer, but I didn’t win” ok, so they get it. Just as I got it as a kid. And in case you missed it, they were giving out participation trophies in 1996 and actually I found one from 1992, so this is not a new phenomenon in an attempt to wussify our children. In fact, a lot of these parents that are praising James Harrison, are also people that received a participation trophy. I know, because I stood along beside them as a team mate.

I continued to think about this over the next 24 hours. I thought about how no one is trying to take the medals I received for running races in my adult life. I thought about how no one is saying that I don’t deserve them. Why not? It’s the exact same thing. I didn’t win any race I’ve ran as an adult, but over half of them I earned a medal for. And, yes, I believe I earned them because I trained for them and fought every step from the starting line to the finish line. I started to think what I hope my kids learn from watching me train and compete. I lose races and I get back up and hit the road or the pool for another workout and compete again. I hope I’m teaching them perseverance and how my perseverance earns recognition. I continued to think about how people say that we are doing our children a disservice by not allowing them to lose. I disagree, I don’t see how complimenting and rewarding hard work, commitment, and team work is a bad thing. Those are all the traits that make people better, not winning. I did not get a job as an adult based on my ability to win races as a child, I got a job because of the lessons I learned from participating.

I think where we go wrong is confusing the terms “earn” and “win”. Winning something is not the same as earning something. Winning is achieving victory, earning is gaining something from work or service (thank you Google). They are not synonyms. Kids can earn a trophy by working hard throughout the season and they can learn what it means to lose and stand tall in defeat. The message is important. The recognition symbolized by the trophy is important. Positive reinforcement is important. I want my kids to know that their work is worth something. That the time and effort they dedicated is important. That even if they didn’t win, they are still better people for trying.

That was yelled at me in a disgusted tone after I tracked down Charlie and reminded him he couldn’t eat a piece of the animal cake served at the party.

I felt awful. I had went around and around with him that he would eat only the cake I brought and he seemed to understand but I still hovered and didn’t trust him to do the right thing. As my good friend pointed out “He’s 4. He can’t be trusted”. It’s true. It didn’t help the guilt that I felt.

Here’s the thing. As a food allergy parent, I HAVE TO TRUST MY CHILD. I need to know that he will make good choices or I will probably go insane. Quickly. I need to know that he is listening and he understands the severity of his condition.

I’ll repeat that….. my four year old needs to be responsible for his life.

Although I have a wonderful community that keeps an eye out for him and does everything in their power to keep him safe, Charlie still needs to be the person that knows what he can and can’t put in his mouth. Or up his nose for that matter. He needs to know to ask about ingredients and he needs to know what ingredients he can’t have.

In some ways we are lucky. Charlie had his first allergic reaction at the ripe old age of 13 months. He doesn’t know what life is without an allergy. The rules and habits we’ve established are all he’s ever known. He doesn’t long for his favorite candy bar or ice cream he can no longer eat. He won’t know what it is like to go somewhere without his epipen. He will always be the kid with the “special snack”. That’s just his life.

At the age of four, he knows he can’t eat peanuts. He knows how to administer an epipen. HE KNOWS HOW TO SAVE HIS LIFE. The amount of responsibility and trust that we put onto that little person is astounding. A four year old needs to have the self control of an adult, and more depending on the adult. (I’m looking at you, Stampy).

I think that is one thing that is majorly overlooked when we talk about these “food allergy kids” and “food allergy parents”. We miss the amount of trust and responsibility that these kids have at such a young age. And the amount of trust that parents put into their kids at such a young age.

It’s not because we want to or even have to. No one is making us trust our children or dole out this responsibility to them, it just comes with the territory. It comes with the epipen. It comes with the allergy.

My kids tend to wander. And by “wander”, I mean show no direction or drive to do any task. I’m amazed they have survived as long as they have as much as they don’t pay attention to their surroundings. They walk into objects, trip, and bounce off people all day long. Somehow, in public this just gets worse. I often refer to taking them out in public as “herding cats” but it’s more like “herding a bunch of stoners” through malls and stores. This is why I HATE taking them to the library.

Why, the library as opposed to anywhere else? Well, the library has shelving that is perfect for a little one to wander into and be completely out of site. Charlie once ran away from me and although I did a pretty good job nabbing him before he got too far, there was a split second I couldn’t see him. Scary for a mom of a 2 year old that doesn’t talk. Now he’s 4, and although he talks, I’m not sure how well he would do in a “lost” type of situation. I don’t think he would find someone to help him. He doesn’t do that at home, he just sits where he is and yells for things. I imagine he would do that lost in a store as well.

Molly is a different story. I always assume advice that I’m giving her falls on deaf ears. There is usually little response and the response I get is often a non sequitur to what we’ve been talking about. She did however call 911 and give the lady all the information she was supposed to once. We didn’t need 911 to be called, but that’s a story for another day. It at least tells me that something is getting in. It wasn’t that long ago that Stampy and I were trying to brain storm the best way to talk to Molly about finding help. Who she should talk to or where she should go in the case that she has wandered off or we’ve been separated. Should she stay put or find a grown up to help her? Is there a right answer? Will she even remember what we tell her if she ever is lost? Who knows?

As with most parenting struggles, it’s always good to know you aren’t alone. So, when author, Louie Lawent reached out and asked me to read Momma Don’t You Worry, I was happy to. I found reading this with Molly was a great starting off point for our conversation of “what to do when you get lost”. The book has a catchy tune and Molly was even able to read it herself which allows for her to take interest in the lesson of the story. The story is about a 6 year old boy that wanders off to play with trains and ends up not being able to find his way back, but remembers what his mom has told him to do. Molly identifies with the main character which is helpful when we head out in public and her need to parrot what she hears and reads means that she repeats the catchy rhymes as we head into stores. I have a feeling this is a book that we will be revisiting as Charlie heads into kindergarten and thinks he is too cool to hold my hand as well.

I recommend this book for anyone that needs a good starting off point for talking to your kids about getting lost in public. The author was generous enough to supply me with my copy, but you can find your ebook on Amazon.